In the spirit of all these ~~back to school~~ posts…
Hi, my name is Lexi. I’ve got Crohn’s disease and some fucked up kidneys. Here are my two cents on college and chronic pain.
1. Take all of your meds with you. Seriously, even if it’s a huge gallon sized ziplock bag filled with meds you hardly ever need. Yeah, yeah, college dorms are small, but that is not the area to cut down on volume. (Hint: instead, bring 200% less clothes. Thank me later.)
2. Tell your teachers. ASAP. If you’re too embarrassed to talk with them face to face, (e.g. ME) just send them a quick email right after the first class. Let them know right off the bat that if you email them in the future about being “sick,” you don’t mean a head cold. (And bam: now they’ll probably know your name!)
3. File disability paperwork. Something I did NOT do right away and really regretted it. The word “disability” felt way too heavy, like I was making a way bigger deal about my health than I should be. Fuck that. Just file the damn paperwork, it’ll probably give you nice perks like more excused absences, etc.
4. Prepare for hell. Imagine the worst day possible. Prepare for it. For me, that meant food I could stomach (saltines, cans of soup, etc.) (do NOT be like me and forget a fucking can opener), my electric blanket, a shit ton of gatorade, pain medication, and my dad’s Netflix password.
5. Find a doctor near you. Know where you’d go if things got so bad you could no longer deal with them yourself. Find out who is and isn’t covered with your health insurance, and write that shit down. I know it sucks. Just fucking do it.
6. Don’t hide. Chances are, you’ll find others going through the exact same thing. I know it’s personal, but just tell people. Tell your roommate. Tell your study buddies. Put a fucking ad in the school newspaper. Remind yourself you are not alone.
It must be nice having people in your life who support you and don’t ignore your pain. It must be nice having people who you can talk to without feeling judged. It must be nice not fighting this all by your own.
I’m a couple of weeks into my summer holidays. As per usual my body detests stopping and has failed me again.
I decided not to let crohns, arthritis, scoliosis, lupus etc. Stop me from having a good time. So I’ve tried to get out and see my family and friends. That has ended up with me being bedridden for 3 days now. I’m so down with these diseases.
I’ve also been trying hard to get support from my government as I’m not fit for work but they are doing their utmost to try and stop me from getting any support. It’s been 6 weeks since I’ve applied and no money. I’m literally worried about food for me and my dogs. It’s been horrible admitting that I’m unfit for work but I had to. And now they are basically saying I should be working etc. I need a solicitor but can’t afford one.
My Dad doesn’t really see how bad I am. As these are all invisible illnesses so he said to me yesterday “you need a job”. If I could work I would be working. I’m a very strong person but recently I feel useless and very weak. However he has given me a home and that’s amazing I will never forget that he did this. He is an amazing man and has helped me through the worst times of my life. I know one day I will have to help him too.
I’m still mourning my old life before I was sick.
I hope everyone is as well as can be. Be gentle with your body, mind and soul. Rest and take your medication. You are worthy of all these things.
Please feel free to message me. I love hearing from you guys and will try to reply to everyone.
if you actually think people who have ostomy bags/colostomy bags/literally any kind of medical device in them/on them shouldnt show off their body in public because its “inappropriate” or “gross” you seriously need to fuck off.
there is nothing, NOTHING, gross about the human body, disabled or not.